Caregiving in the COVID‐19 pandemic: Family adaptations following an intensive care unit hospitalisation

Abstract Aim and Objective To identify how family caregivers adapt to the caregiving role following a relative's COVID‐19‐related intensive care unit (ICU) hospitalisation. Background Family caregiving is often associated with poor health amongst caregivers which may limit their capacity to effectively support patients. Though severe COVID‐19 infection has necessitated increasing numbers of persons who require caregiver support, little is known about these caregivers, the persons they are caring for, or the strategies used to effectively adjust to the caregiving role. Design A qualitative descriptive study design was adopted, and findings are reported using COREQ. Methods A secondary analysis of transcripts from semi‐structured interviews conducted with recently discharged ICU patients who had COVID‐19 (n = 16) and their family caregivers (n = 16) was completed using thematic analysis. MAXQDA 2020 and Miro were used to organise data and complete coding. Analysis involved a structured process of open and closed coding to identify and confirm themes that elucidated adaptation to family caregiving. Results Six themes highlight how family caregivers adapt to the caregiving role following an ICU COVID‐19‐related hospitalisation including (1) engaging the support of family and friends, (2) increased responsibilities to accommodate caregiving, (3) managing emotions, (4) managing infection control, (5) addressing patient independence and (6) engaging support services. These themes were found to be congruent with the Roy adaptation model. Conclusions Family caregiving is a stressful transition following a patient's acute hospitalisation. Effective adaptation requires flexibility and sufficient support, beginning with the care team who can adequately prepare the family for the anticipated challenges of recovery. Relevance to Clinical Practice Clinical teams may improve post‐hospitalisation care outcomes of patients by preparing families to effectively adjust to the caregiver role—particularly in identifying sufficient support resources. Patient or Public Contribution Participation of patients/caregivers in this study was limited to the data provided through participant interviews.

confusion, and psychological distress that may take weeks to years to recover from-if at all (Halpin et al., 2020;Ogoina et al., 2021;Parotto et al., 2021). Further, patients who have been discharged from the ICU with health conditions similar to COVID-19, such as acute respiratory distress syndrome, often require the support of family members to assist in disability management, recovery encouragement, and identification of formal support services (Hauschildt et al., 2021). While the support of family and friends following a severe COVID-19 infection requiring ICU hospitalisation is clearly necessary, there is a dearth of literature about the post-hospitalisation COVID-19 family caregiving experience, particularly information about the families, the patients they are assisting, or how clinicians may best support families in adjusting to the caregiving role.
Examining the dyadic experiences of recently discharged ICU patients who have had COVID-19 and their family caregivers may allow for a deeper understanding of these experiences and lead to improved family health outcomes.

| BACKG ROU N D
Family caregiving has long been recognised as a formal role with economic, social, physical and psychological consequences for care providers including financial loss, social isolation, loneliness, depression, anxiety and worsened overall health (AARP & National Alliance for Caregiving, 2020; Capistrant, 2016;Grice, 2020).
Similar findings have been noted in the few studies examining family caregivers of patients with COVID-19, particularly, financial challenges, stress, anxiety, insomnia, and social isolation (Picardi et al., 2021;Rahimi et al., 2021). It is common for caregivers, across patient diagnoses, to become unexpectedly engaged in family caregiving responsibilities, with little to no training, following a patient's acute illness, or medical event, and subsequent hospitalisation (AARP & National Alliance for Caregiving, 2020; Naylor et al., 2017;Slatyer et al., 2019). Presently, the COVID-19 pandemic has been the primary source of acute hospitalisations amongst older adults, with most surviving adults who were admitted from home, returning home following hospital discharge (CDC, 2021a(CDC, , 2021bChopra et al., 2020;Robinson-Lane, Sutton, et al., 2021). Though families have long reported dissatisfaction with the hospital discharge process (Bauer et al., 2009), legislation has been passed, or will soon pass, in most U.S. states that require the better engagement of family caregivers in the hospital with the care team who can adequately prepare the family for the anticipated challenges of recovery.

Relevance to Clinical Practice:
Clinical teams may improve post-hospitalisation care outcomes of patients by preparing families to effectively adjust to the caregiver roleparticularly in identifying sufficient support resources.

Patient or Public Contribution: Participation of patients/caregivers in this study was
limited to the data provided through participant interviews.

K E Y W O R D S
caregiver, coronavirus, family, follow-up studies, inpatients, psychological adaptation, qualitative research What does this paper contribute to the wider global community?
• This study provides insights into the strategies that nurses may use to improve post-discharge outcomes for families following a COVID-19-related ICU hospitalisation.
• Family-centred discharge planning is highlighted as an important approach that ensures both patient and caregiver needs are met.
• Adequate social support is identified as a key factor in effective adaptation to family caregiving. discharge planning process, including providing any necessary education or training (AARP, 2014; Administration for Community Living [ACL], 2021). Despite these efforts, pandemic-initiated policies aimed at reducing infection spread within hospitals have kept caregivers away and perhaps inadvertently further reduced caregiver preparedness for patient discharge (Lloreda, 2021).
Underprepared caregivers are more likely to experience increased insomnia, stress, depression and anxiety; symptoms that not only directly affect caregiver health but can also influence the perception of care burden, the familial relationship quality, and both mental and cognitive health outcomes in patients (Picardi et al., 2021;Robinson-Lane, Zhang, & Patel, 2021;Snyder et al., 2015;Tschanz et al., 2013). Of particular concern, poor mental health outcomes amongst family caregivers have been related to poor physical health and diminished ability to fulfil caregiving roles, increasing the likelihood of alternative placements for patients such as assisted living communities or nursing homes (Chang et al., 2010;Schulz & Sherwood, 2008). In contrast, caregivers who have been more actively engaged in discharge planning felt better prepared, had higher satisfaction and acceptance of the caregiving role, and reported better health than caregivers who were less engaged (Bull et al., 2000). Recent study findings suggest that caregiving during the COVID-19 pandemic has resulted in even more psychological distress for family caregivers, caregiver burden, and loneliness than pre-pandemic (Archer et al., 2021;Beach et al., 2021;Leggett et al., 2021), thus highlighting a critical need for sufficient family caregiver support.
As a mass disabling event, the COVID-19 pandemic will continue to result in challenges to patients' physical, cognitive, and mental health that will likely require the ongoing support of their families (Crook et al., 2021;Mandal et al., 2021;Roth et al., 2021). Examining how the family, particularly the patient/caregiver dyad, adjusts to manage COVID-19-related disability and related caregiving needs following an ICU hospitalisation can provide important insights about family support requirements and critical intervention points both pre-and post-hospital discharge. To this end, the following examines the dyadic post-discharge experiences of family caregivers and their relatives who were hospitalised in an ICU with COVID-19related infection.

| Design
Qualitative descriptive research methods facilitate the inductive discovery of patterns and themes around a life event (Parse, 2001;Powers & Knapp, 2010;Vaismoradi et al., 2013). As such, a qualitative descriptive study design was employed to answer the research question, "How does one adapt to family caregiving following an ICU COVID-19-related hospitalization?" The Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al., 2007) was used to report the findings from this study (See Supporting Information File S1).

| Data and study participants
Data from the Health Enhanced by Adjusting and Recovering Together (HEART) COVID-19 Recovery Project (Research Center for Group Dynamics, 2021) was used for this secondary data analysis.
The HEART study recruited dyads of family caregivers and patients hospitalised in the U.S. with COVID-19 at the start of the U.S. pandemic through October 2020 in Southeastern Michigan. The study explored patient and caregiver COVID-19 experiences from initial illness through hospitalisation and recovery at home, with the aim of identifying areas for rapid intervention. The primary product of this work was a patient and family collaborative care management guide (BioSocial Methods Collaborative, 2020). Eligible study participants were English-speaking dyads at least 18 years old in which one dyad member was the family caregiver of a recently discharged patient and the patient met the following inclusion criteria (1) hospitalised as a result of a positive COVID-19 test, (2) spent at least 3 days in an inpatient unit during hospitalisation, (3) experienced heated high-flow nasal cannula, non-invasive positive pressure ventilation or mechanical ventilation of Fi02 > 60% during their hospital stay (as noted in the medical record) and (4) discharged to home from the hospital.
Dyads were recruited through multiple methods including: (1) social media campaigns (Facebook, Instagram), (2) a study website, (3) a research volunteer web portal and (4) targeted letters, emails and phone calls using a patient database.

| Data collection
Semi-structured interviews were conducted with each dyad member (n = 32), by a diverse team of male and female research staff trained in qualitative interviewing. Each interview took an average of 59.2 minutes (see Table S1). Co-authors (ANL, AGC, GO) participated in interviewing participants and had no prior connection to, or relationship with, participants. Interview questions were developed by a team of clinicians and health service scientists. Interviews focused on patient and caregiver experiences in providing and receiving care for a severe COVID-19 infection and the immediate recovery period following hospitalisation. Interviews were conducted remotely via phone or video conferencing based on participant preference and internet connection availability. All interviews were audio-recorded and verbatim transcribed. As dyads were self-selected to participate in the study, which was limited to one-time interviews of each caregiver and patient, and a brief electronic demographic survey, there was no attrition. Braun and Clarke's (2006) approach, which supports the examination of dyadic interviews, was used to complete the analysis. MAXQDA 2020 (VERBI Software, 2019) and Miro (2020) were used to organise data and complete coding. A team of four coders individually completed the initial open coding of all transcripts (n = 32, 16 caregiver transcripts, and 16 patient transcripts) with attention to the phenomena of adaptation to family caregiving. The research team then collaboratively reviewed and sorted all the codes and identified 14 themes. These themes were used to develop a codebook and guide for subsequent analysis (see Table 1). Next, two teams consisting of two coders each completed closed coding by reviewing the transcripts for the presence of the identified themes. This additional level of analysis helped to ensure reliability. The 14 themes were then ranked using our analytic software by frequency of coding occurrence across transcripts. This allowed us to identify themes most representative of participant experiences. Final themes were then further defined, refined and evaluated for relevancy to the phenomena of adaptation to family caregiving and application to relevant nursing theory.

| Ethical considerations
All eligible participants provided individual electronic written consent prior to study engagement and received a small stipend for their participation. Institutional Review Board approval was granted by (The University of Michigan (HUM00158390)) for both the primary study and this secondary analysis. All study team members completed training in human subjects research including the responsible conduct of research as required by the IRB. Study team composition included doctorally prepared psychologists, registered nurses and physicians, as well as graduate and undergraduate students, and non-student/non-medical personnel. No study team member had a prior relationship with any of the participants. Staff who conducted participant interviews also completed additional training on qualitative interview techniques. To ensure participant confidentiality, participants are identified as either a caregiver or patient along with a numerical identifier.
Triangulation, debriefing and review of collected data, along with referential adequacy, or comparison of preliminary findings against raw data, were used to ensure credibility. Investigator triangulation was ensured by using multiple independent coders. Consistency in initial data collection was ensured by using an interview script and reviewing recordings throughout the data collection period to provide feedback to interviewers as needed. In addition, inter-rater reliability between coders was evaluated using kappa coefficient. If a kappa of less than 0.75 was noted, study team members met to review areas of discrepancy and reach consensus. The comprehensive reporting of the study sample, data collection methods, and interpretive process ensure transferability and confirmability, while our use of qualitative software tools and weekly team meetings helped to ensure dependability by allowing for process review, maintenance of an audit trail and team member reflexivity. Our results report the most significant and relevant themes illuminating the adaptive family caregiving experience.

| RE SULTS
The average age of caregivers in the sample was 54 (SD 13.3, range 18-74), and they provided care for patients with an average age of 58 (SD 13.2, range 28-78). While most caregivers were women (n = 12, 75%), most patients were men (n = 12, 75%). The sample was predominately White (n = 22, 68.8%) with the majority of caregivers and patients educated with at least some college (n = 28, 87.5%).  The support of family and friends was a major theme expressed by the dyads that significantly contributed to the caregivers' ability to support their loved ones and maintain other responsibilities. This theme was derived from the code of family support and was used to indicate when friends, family members, neighbours, religious community members, and other communities that individuals of the dyad were a part of provided material assistance or emotional support that ultimately lessened the burden (physical or emotional) of the caregiver. This support included activities such as getting groceries, delivering medical supplies, providing transportation, offering advice, emotional support and prayers.
As one caregiver noted, "You know, with family support and stuff, you know they're like there when you need them you know. You just say 'hey' and somebody's over doing something…even if it's just dropping [something] off on the porch" (Caregiver 0103405).
Both patients and caregivers acknowledged the importance of these community connections to their overall well-being. A patient noted, "There has been no shortness of support whatsoever from friends, family, to even strangers. So it's…yeah. The support has been great. And it's crucial, and I mean it's absolutely crucial" (Patient 1226314). Ancillary support Theme: Engaging Support Services Support services provided by medical providers such as home care, therapy or monetary coverage ultimately lessen the burden of the caregiver 10 10 Wishes a The expression of not having enough quality, quantity, or sufficient amount of assistance (such as financial, medical, emotional or social), information, or communication that will enable one to function or act optimally as a caregiver

14
DecisionMaker The decision-related roles and tasks that the caregiver adopts, due to the care recipient's temporary cognitive impairment caused by COVID-19 14 9 CareComm Caregiver's active role in advocating for care recipient's needs through communication and coordination with the health care team. Includes any communication between the caregiver and the health team regarding updates on the care recipient's status

6
Inside support Any support that gives the caregiver an advantage by having direct or indirect access to someone inside the healthcare system who can provide information or access to resources, or contact with the care recipient, reduces the burden on the caregiver 8 7 Spiritual support The degree to which a caregiver experiences or verbalises a connection to a higher power (i.e., God or other transcendent force) that the caregiver feels is actively supporting, protecting, guiding, helping, and healing One of the more surprising findings of the study that became evident by interviewing dyads was how the need for, and assertion of, independence at times affected the familial relationship. Often caregivers expressed concerns around the safety and/or decisionmaking capability of the patient who seemingly was doing more than perhaps they were ready to. As one caregiver noted, "I know he had some delirium, but he didn't want to acknowledge it" (Caregiver 0101572). This need of the caregiver to keep their loved one safe or to have necessary supports in place was often juxtaposed by the patients' desire to quickly return to their former level of independence and former familial role. As one patient aptly noted, "I don't wanna be a burden to anybody" (Patient 1101572). Despite the seriousness of an ICU hospitalisation and medically anticipated long post-discharge recovery period, a common, and perhaps unrealistic, expectation of patients was a rapid return to their normal level of functioning. This theme was derived from the code independence.

| Engaging support services
There was a case manager and a social worker who were on the phone office. So nice. They said any time you have any questions, please call us. And they did.
Yeah, they tried to help as much as they can.
After the patient was discharged from the hospital setting, both members of the family dyad continued to need additional medical support for full recovery. The most frequently used homecare services by families included nursing support, occupational therapy and physical therapy. The additional medical support in the home allowed caregivers to feel cared for and, particularly in the case of therapy, provided patients with tangible hope of recovery. However, at this early stage of the pandemic, several participants reported a significant delay in the initiation of home care services.
Additionally, many caregivers noted that they declined services once they became available as they had become proficient in care delivery themselves. The theme of engaging support services was derived from the ancillary support code.

| DISCUSS ION
Collectively, all six themes (1)  data from an American longitudinal cohort study of older adults to identify the mechanism by which caregivers use social networks to increase access to support and resources. Specifically, they noted that connections to non-related persons who do not know others in one's social network, or bridging ties, extends the potential capacity of the caregiver to gain access to novel information that can support care-related tasks and allows for support without the same emotional attachment one would find in a bonding tie-generally a relative. Further, Roth found that caregivers were more likely to have bridging ties than non-caregivers.
In our study, many families reported having various bridging tiesparticularly fellow church members and, in some instances, neighbours. Our study finding that homecare and other ancillary support services were advantageous to families in adjusting to the caregiving role further supports the idea that interdisciplinary healthcare providers may also serve as bridging ties to families, thus extending their social support network. These additional types of bridging ties facilitated information gathering and a sense of well-being. The increased likelihood of depressive symptoms in new family caregivers that was noted by Zwar et al. (2020) may explain the focus of our caregivers on emotional self-regulation-and particularly remaining positive-a challenging feat for individuals adjusting to the traumatic experience of witnessing a loved one survive a life-threatening illness, unexpectedly having to take on more responsibilities, and dealing with which shifting power dynamics within relationships. Czekanski (2017) noted that shifting role changes from relative (e.g., spouse or child) to caregiver is often complicated by the uncertainty of what the future might bring and may lead to feelings of grief and loss. Relatedly, Fox (2022), who describes their mental illness recovery journey within an autoethnography, discusses the identity crises that occurs as the patient/caregiver dyad negotiates and renegotiates their public (caregiving/receiving) relationship and private (familial) one. Inattention to the changing needs of either party can affect both individual and family unit functioning. It is clear that a primary challenge for families new to caregiving relationships is the adaptation to a new social role. This adaptation is perhaps complicated by the need to maintain infection control due to  and the assertion of independence by patients desiring to maintain their role within the family structure as it were pre-hospitalisation.
These changing familial relationships and related stress responses that are consequential to a loved one's COVID-19 ICU-related hospitalisation and discharge are consistent with the stress and coping relationships articulated in the Roy Adaptation Model (Roy, 2008).
The Roy model may be used to guide the appropriate assessment of families and the development of effective interventions.

| Adaptive coping and the Roy adaptation model
The Roy Adaptation Model (RAM) (Roy, 2008) is a stress and coping model that is used to guide nursing practice. As a primary goal of this model is to "enhance life processes to promote adaptation" (Roy, 2008, p. 28), the model is an optimal fit for understanding how pre-and post-ICU discharge processes may be enhanced to improve family outcomes-particularly adaptation to caregiving. In addition to facilitating the connection of study findings to nursing practice, the model supports the advancement of nursing science by connecting and explaining the phenomena of adaptation as it relates to central metaparadigm concepts in nursing-persons, environment and health.
The model is based on the premise that humans are holistic adaptive systems in constant interaction with their internal and external environments. To maintain optimal system functionality (i.e., health), humans must effectively cope with stress caused by various stimuli from their environments, such as an acute life-threatening illness requiring caregiver support. The model posits that individuals and groups respond to stimuli through various coping processes that may be categorised as being in particular adaptive modes: physiologic (i.e., affecting the body), interdependence (i.e., reliance upon others), role function (i.e., who one is in relation to others) and self-concept (i.e., beliefs about oneself) (See Figure 1). Each mode represents a type of challenge that the family, and particularly the caregiver, must deal with in order to adapt to the changes caused by the stress of providing or receiving care. Effective adaptation is evidenced by positive health behaviours. The healthcare team can develop effective interventions for ICU patients being discharged with COVID-19 and their family caregivers by targeting specific adaptive modes or touch points of intervention.

| The physiologic mode
For example, in the physiologic mode, the primary adaptive concern is the need to meet the basic physical requirements of the body, particularly the need for activity and rest. Family caregivers increased responsibilities to accommodate caregiving likely leads to less rest, and more undesirable activities than expected, while recently discharged COVID-19 patients likely need more rest. Some family caregivers in this study discussed significant physical challenges of providing care assistance with activities of daily living such as dressing, bathing and ambulation, while patients spoke about their desire to remain active and non-burdensome. An effective pre-hospital discharge intervention for families might include providing tips on getting adequate rest and the development of a plan for activity prioritisation and maintenance.

| The self-concept mode
In the self-concept mode, the primary adaptive need is for psychic and spiritual integrity or having confidence in oneself and who one is in order to exist with a positive self-perception. Roy (2008) notes that often the sense of self is influenced by social interactions and perceptions about how one ought to be. For family caregivers, the idea of being a capable caregiver and what that means to them, likely influences their self-concept. The fact that spirituality/spiritual support was a somewhat common theme amongst caregivers (n = 9) but not amongst patients (n = 1), is perhaps evidence of the challenge within this adaptive mode for caregivers. Clinicians may better assess for difficulties caregivers may be experiencing in coping with self-concept by discussing with families what being a caregiver means and/or looks like to them, assisting with the development of realistic goals, and implementing necessary supports, such as training in aspects of care delivery, so that expectations may be more readily met.

| Role function
In the role function mode, adequate coping with challenges to the societal role an individual holds is necessary. The difficulties of this mode were perhaps best highlighted in how patients spoke about the need for independence and the challenge that this presented for family caregivers. Roy (2008)

| Limitations
A few limitations of the study should be acknowledged. First, there was not a highly diverse sample of family dyads included in the study.
Most participants were White and college-educated with incomes over $50,000. Therefore, findings cannot be generalised to populations of minoritised and/or lower-resourced populations. However, as with all qualitative studies that aim to understand human phenomena, such as familial adaptation following a critical care hospitalisation, examining situational experiences allows for the illumination of meanings, values and relationships that shed light on the human experience (Parse, 2001). Findings from this study may still be used to understand the pressing concerns of families, particularly the concerns of family caregivers. Second, the data analysed for this study were collected using interview scripts aimed at simply understanding the experiences of family dyads with COVID-19 from initial illness thru discharge. As such, participant interviews may have lacked more in-depth information about the specific strategies used by patients and caregivers to adapt to the family caregiving role.
A future prospective study should consider focusing on recruiting more diverse samples and implementing interview designs that use open-ended questions based on study objectives. In addition, examining the role of contextual factors such as income, age, religion and cultural identity on social networks and support may provide important insights on variances in family health outcomes amongst families who are adjusting to integrating a family caregiver.

| CON CLUS ION
Adequate adaptation to family caregiving of patients who have been recently discharged from the ICU with COVID-19 requires compensatory changes in familial self-care activities-namely prioritisation of caregiver personal health and wellness, along with attention to pre-illness relationships. Without additional external support, either formally from clinicians or informally from social networks, relatives may become overwhelmed with the stress of family caregiving which may lead to negative health outcomes in both patients and caregivers. Clinicians, particularly nurses, play a critical role in helping to ensure that families have the support that they need before they leave the hospital. When social support is adequate, family caregiver/patient dyads can spend more time relating to one another as a family rather than just caregivers and patients. Ultimately, this shift in approach to focus on the needs of the family rather than just the needs of the patient facilitates family adaptation following a COVID-19 ICU-related hospitalisation.

| RELE VAN CE TO CLINI C AL PR AC TI CE
Nurses play a critical role in the coordination of care and discharge planning processes. Assessing the family as the unit of care before discharge allows clinicians the opportunity to examine caregiver adaptive needs and facilitate timely connections to relevant supports. In particular, strategies to reduce challenges with the transition home such as caregiver skill building sessions initiated during hospitalisation and continued post-hospitalisation may be promising in helping caregivers feel supported.

ACK N OWLED G EM ENTS
We wish to thank Tannaz Sabetfakhri and Jeannette Jackson for their contributions to this study. We are also grateful to the families that were willing to share their stories.